helping conor in a furry and cuddly way

Kendra Scott jewelry has offered to help with our fundraising by holding an event from 6-8pm on Monday, March 31! 20% of all purchases will go toward Conor’s autism assistance dog. Come to the Austin store on South Congress for some shopping and cheer, or look online (www.kendrascott.com) for gifts or something for yourself! If you are unable to make it to the event and would like to purchase something, please call the Austin store at 512.354.4737 and they will take your order and mail it to you. Online orders will not go toward Conor’s dog. Thank you all for your support!

Not resolutions, but goals. Baby steps and basking in the smallest accomplishments. I suppose we should all live life that way, but in Conor’s case, we really do celebrate the little things. This Christmas he enjoyed some of his presents and even opened one on his own! As someone who loves the Christmas season, I was delighted by this small amount of enthusiasm! I mean it paled in comparison to his brother’s passion for all things Christmas from making gifts for people to opening gifts from people. Hopefully some of that will rub off on Conor. In the meantime, I am happy that he liked some of his gifts, enjoyed Christmas dinner and participated as much as he was able to. Next holiday: Conor’s birthday. Another challenge that I hope he is up to.

The much looked for, yet often dreaded, holiday season. Kicked off by Halloween which is usually a nightmare (haha) for Conor given all the noise, costumes and candy (he does not like sweets). Yet this year it appears there has been a shift in Conor’s universe and he did in fact have a fun Halloween.

Starting with school, Batman flew (does he fly? Drove in?) in to say Hi to Conor, and he enjoyed meeting the super-nice caped crusader. I thought all of his Halloween enjoyment would end there. I was mistaken when he came home and tried on his brother Jack’s shark costume. After that he put his own Knight costume on and went trick-or-treating. He went to 4 houses, which was great given his dislike of new activities and the whole anti-sweet issue. I was emailing someone while he was out (Jack and I trick-or-treated earlier with friends) and said that Conor had been out trick-or-treating for a couple hours. My friend was shocked he was out so long, and I said I was pretty sure he and his Dad found a house with beer and a spare Ipad, and they were holed up there. Sure enough, they came home around 9pm and Conor was happy as a “tornado in a trailer park”.

The next night, Conor put his costume back on and kept saying he wanted to go trick-or-treating. I believe what he meant to say was he wanted to go to the neighbors house and play on the Ipad. At least he enjoyed Halloween!

But in fact it is something Conor goes to each week. And no, they don’t call it that. It’s just what I call it. I’m not putting it down in any way, and think it is a great idea, and helpful for the boys. Maybe not my boy, but other boys. I can’t help but chuckle silently as some of the kids practice be as anti-social as possible (Conor), while others blurt out things at random. While I smile at the way each boy interacts in the group, the real lesson here is that no child with Autism is the same. Each display their sociability and personalities in different ways. Just like typically developing kiddos.

One of the tenets of autism is difficulty in social interactions and relationships, which makes this a very good idea for a class. But still, it’s kind of funny. At least to me. Maybe that’s because my son is the least social person there and has very limited speech which hurts his ability to create relationships with the other boys.

I mean come on, if you can’t laugh at the small things, you end up crying.

Driving in the dark. No headlights. That’s one way I look at Conor when he is so frustrated that he can’t say what he’s thinking. Walking around in a foreign country and not knowing the language or landscape. Another way I look at his inability to communicate with people. With me.

Not a day goes by that I don’t wish I could have a conversation with him. I know there’s a lot going on in his mind, he just can’t get it out, and we haven’t found the key to unlock it. Watching him struggle to say something, especially since he understands so much that is said to him, is terribly difficult. What I wouldn’t give for that key…

Conor uncharacteristicly wearing sunglasses. He is working on his first album cover photo. We all agree that he will probably make a better DJ than band member, but you never know! At least his photos will be ready for his debut whatever it may be..

Everyone with a special needs child spends a lot of time on the phone arguing with insurance companies. No one is exempt from this annoying fact of life. So why am I telling a story about my insurance company (BCBS TX–and I hope you read this post)? Because it has passed annoying and into the ridiculous.

Yesterday I get a form denying a claim for my son Conor. Ok, been there, done that. The kicker is that the supervising medical director who denied my autistic son’s treatment was an OB/GYN. I feel that when my son was delivered and entered this world, his relationship with OB/GYN’s would be over. Period.

So I call BCBS, and as soon as I get their first line of defense on the phone, I tell her that the conversation we are about to have is only going to make me mad, so why doesn’t she just forward me on to her supervisor. “Well, I would like to try to help first”, she replied. Ok. So I launch into my unbottled anger that an OB/GYN is making decisions on my SON’s autism treatment. I don’t know what type of training this OB/GYN has in the way of autism, but I’m damn sure it is not much to nil. I further explained that I think it is utterly unacceptable to have an OB/GYN make ANY type of decision for my SON at all. Daughter maybe if I had one and not for autism, but not my son. And, this doctor should have absolutely no authorization to determine what my son needs in the way of therapy for autism. (caveat: unless he or she knows something the rest of the world doesn’t and has a cure. I would need fact based evidence on that though).

I got more and more worked up as I explained all this to the now slightly frightened/annoyed person on the other end. I did mention that I warned her that I would only get more worked up and that she should have put me through to the supervisor from the start.

Then I had the same conversation with the next line of defense in BCBS’s arsenal of people who try to make sure you get as few benefits as possible. By now I was loaded for bear and asked if he could explain how this scenario made any sense. I asked very nicely (I thought) what arse made an OB/GYN the medical director in charge of making decisions on autism treatment?? He was unable to provide a suitable reply and told me I was welcome to appeal the decision by mail. The brush off. A technique they use that only makes me more mad.

So far my plan is to call them everyday and have the same discussion and hopefully annoy someone to death. Maybe more than someone. I believe nothing will come out of that but it should be a cathartic experience and a way to make me feel better. I’m pretty sure it’s going to take a lot of calls to get to that point though.

Speech therapy, Occupational therapy, sensory input devices, socialization tactics…… each taking up so much time and yet when things seem they are at the bleakest, a new sentence will emerge, or a new skill evolves. While spending so much time in the trenches of the special needs world, it is sometimes difficult to see how far Conor has come since he has been immersed in school and therapy and anything else we think may help him. This past week he asked if he could go to Rolly Pollies, a kids gym that has all sorts of great sensory input activities for him. Since that comment, he asks to go daily. Of course we can’t do that due to his school and therapy schedule, but that sentence has led to others including “when can we go to Rolly Pollies?”. I had never heard him use the word “when”. And while he asks to go daily now, he understands when I tell him it is closed or we are unable to go because we have this or that to do. To many this may seem a small thing, but to me it’s a victory. One that will takes us to further down the road toward……??? Something good anyway..

And, while on the subject of Rolly Pollies, a big thank you goes out to John, the owner in Bee Caves. He has gone out of his way to help Conor by showing him some things to do on the equipment, and by linking me up to some other parents of kids Conor’s age with Autism. Thanks John! We will see you soon. Literally 🙂

Conor, Jack and I went to one of those jump houses (lot’s of blow up things to jump and slide on for those of you out of the loop). I won’t name names as we like going to this one a lot and have always had fun and support even when Conor is having one of his bad “autism” days. So, we are there at a time it is not too busy, and Conor goes and jumps on one of the “under 3 year old” inflatables. Now, I know that he shouldn’t have done that, but there were no kids in the place younger than 3, and all the other kids of varying ages above 3 were in it at one point or another and no one was upset about the situation. Except the older woman who is an employee who very randomly, and seldomly, walked around shouting at the kids not to run, get off this or that, etc.. She really had a calling as a drill sergeant if she hadn’t already been one. She even had the haircut. Of course, Conor is alone on the under 3 yr jumpy house on one of her rare walk-throughs when she sees him and starts yelling at him to get out, as he is clearly over 3. He ignores her and continues jumping. I had been watching and rushed over to take him out when she gets even more upset at him and yells more loudly (and not so nicely) for him to get out. She was incensed that he was ignoring her. I called to Conor, and she told me he wasn’t listening and was going to be asked to leave. I had to throw out the “A-bomb” at that point and told her he’s autistic and can’t talk much, not to mention couldn’t hear above the screams of the other kids and the noise the inflatable things make. She immediately apologised and said that there were a lot of kids with autism that came to the place. I don’t what she was trying to convey to me at that point. I felt if she had been around all these other kids with autism that maybe she should give the benefit of the doubt to a child who is not responding appropriatley.

Conor got out of the jumpy thing when I asked and went to find something else to play on. The woman followed me briefly saying that there really were a lot of kids with autism who go there and I just said that I had to keep an eye on him so that he didn’t break any rules. Meanwhile, the under 3yr jumpy house filled up with clearly over 6yr olds as we spoke.

So, I don’t know how or if she will remember that incident, but I hope she does. Parents with kids of different abilities remember them. And, just because a child doesn’t look like he has any issues doesn’t mean he or she doesn’t. It’s difficult to have a child so cute (my own bias there) and then have people project certain behaviours that he should accomodate, and when he doesn’t, blame goes to him and to the parent. I suppose sometimes that is true. But sometimes folks should take a step back and consider there is more going on than just bad parenting or bad behaviour.

Needless to say, I hope the woman who yelled at Conor (ugh! still hurts) woke up in the morning and thought about the situation. If it was no more than a flitting moment in her life with nothing gained, than that’s sad and a missed opportunity on her part. A goal for everyone should be to have a little understanding for those you don’t understand.